Yet, at the time of my diagnosis I was working as a philosophy lecturer at a university and, to my surprise, I found that my training as a philosopher gave me immense resources and literature to draw on.
Although I had written on the metaphysics of death before (and have published a book called Life and Death in Freud and Heidegger), exchanging theory for practice was very hard.
Suddenly I was not dealing with abstract metaphysical issues, but with my life, my future and my body.
Could I be ill and happy? This question quickly became central to my life as an ill woman. Since my condition has no immediate prospect of a cure, I had to learn to live with it. Moreover I wanted to live well with it. This is where philosophy came in.
Philosophers have traditionally been occupied with existential questions. The French philosopher Montaigne, in his essay To Philosophise is to Learn how to Die, wrote: "all the wisdom and argument in the worlds eventually come down to one conclusion; which is to teach us not to be afraid of dying".
According to this view, we do not become wise just for the sake of it. Rather, wisdom must serve us in our effort to live well and be happy. Philosophy is seen as a practical aid, a set of skills.
This is obvious in the writings of the ancient Greek philosopher Epicurus, who thought of philosophy as medicine for the soul, a form of therapy in words.
He took on one of the most formidable challenges of human life: our attitude towards death. Although we cannot avoid death or illness, we can change the way we think about them.
Epicurus suggested cultivating a sense of wellbeing that is independent of our physical health. "What is good is easy to get," he said, alluding to the simple life he advocated, "and what is terrible is easy to endure."
Of course this is very hard, indeed sometimes impossible. But for Epicurus the point was to balance every moment. A moment full of physical pain may be ameliorated by remembering happy events.
Epicurus himself, as the story goes, died in terrible agony from kidney stones. But he endured great pain calmly with the help of a glass of wine and the company of his friends.
Nowadays we have effective pain control, but emotional pain, too, can be balanced with good things. The anguish I sometimes feel about how horribly wrong my life went or the friends who stayed away because "they didn't know what to say" was painful. I learned to balance this by rejoicing in small pleasures.
This did not happen overnight. It took many months of reflection - and long conversations with Grazyna, a close friend who also has LAM - for me to learn to live with my illness.
But I eventually found that time is too precious to waste agonising over a broken wing mirror, or a quarrel at work. I learned to distinguish the really bad things (a decline in lung function) from unimportant ones (wrinkles).
Another important aspect affected by illness is our attitude towards time. The future no longer holds the promise of many more decades, and death is not an abstract, distant concept.
One of the questions I found the most offensive when I told people I was ill was: "So how long have you got?" I was shocked by the bluntness - but also baffled by their need to know.
Yet ill people say their attitude towards time changes. I often stop now, when walking my dog, and remind myself to look around, to appreciate a rare sunny moment. Epicurus suggests we learn to live in the now, an idea echoed by Goethe who talked of the "splendid feeling of the present". Since we have no control over what has already happened, and little control over the future, we should delineate a portion of the present that is unaffected by both.
In practical terms, I no longer save money. I ceased to make extra payments into my pension fund. When I want to do something, I no longer hesitate or feel guilty about spending time or money. There is no point saving for a rainy day. And it is curiously liberating to live in the now, to be freed from having to plan, make a future, or strategise.
More than anything, I am grateful for my husband's unflinching optimism and support. When I was diagnosed, he said something that has stayed with us ever since: this is not a disaster, he said. It is an obstacle. And with his patience, support and love we have succeeded in creating a happy life together.
It is also true that for those living with chronic illness, for a prolonged period it may sometimes take a back seat. Once my own condition stabilised, eight months after my diagnosis, I managed to renew most of the activities I had enjoyed before and to live a fulfilling life. I work full-time, see friends, go for walks - I just do everything more slowly and travelling is more difficult.
I cannot change reality. My illness is here to stay. But I can enjoy the pleasant aspects of my life, such as my husband's company. Cultivating wellbeing is an ongoing process of learning to accept your limitations.
It is a state of mind with which we can respond to the constant flux of life, not an achievement reached once and for all.
I learned to stop destructive thought cycles, such as imagining how blissful other people's lives were. It is possible to have a good life even without physical health. It is possible to flourish within the constraints of illness. And philosophy, I believe, can give us the tools to achieve these goals.
And so, I continue to ride my electric bike to work, go to yoga, walk my dog. I continue to live. Sometimes my illness makes life hard - it often takes up more time and space than I would like it to. But it has also given me an ability to be truly happy in the present, in being here and now.
• Dr Havi Carel is the author of 'Illness' (£9.99), part of the Art of Living series and which is published by Acumen on 18 September. For more on LAM see the websites: www.lamaction.org and www.lamtreatmentalliance.org